ALS Gehrig Jersey Progress Notes and Tonight’s (1/3) WBZ-1030 Call-in

January 3rd, 2011 by Al Lewis (alewis)

The good news is that we appear to have been the most visited ALS website and facebook page last month.    The bad news is that we did not make progress in our goal of creating this new sustainable, visible, source of funding and awareness.    This is probably mostly because the Yankees and all the rest of Major League Baseball have been on vacation until today.

Here are the other progress updates:

(1) Many people wrote to the Yankees, as suggested in the previous posting.  I know this because I was cc’ed or bcc’ed on some notes.  Thank you for making these notes respectful but compelling at the same time.

(2) Many people also suggested the Whytheheck facebook page to their friends, who in turn “liked” it.  The large number of “likes” will show the Yankees that many people think this is a great idea.   With only 2500 “likes,” we can’t say that this idea has gone viral, but that’s enough “likes” to say that it has gone at least bacterial.

(3) Quite a number of people have adding very poignant comments, stories, remembrances (under the “discussion” heading), links, and photos of their own to the facebook page.     Many people have stories to tell, each more moving than the last.   Telling our stories also helps to educate others on the need for progress against ALS, raising awareness in a very personal way.

(4) Reminder:  You can call in to WBZ-1030 tonight between 9:00 and 10:00 PM to discuss this.  I don’t know how much of the interview will be about ALS but partly that will be driven by the callers to  617 254 1030.

(5) For the foreseeable future (until this jersey idea reaches fruition), I am no longer going to use this site for the Why the Heck Aren’t We Already Doing This Stuff? book promotion.  Not only that, but I am going to be giving away the .pdf version free, via a simple download, starting now.   Just go to the book page on this site.  The reason for this is that it seems inappropriate to benefit personally from this site in any way, given the shared tragedies that most of us have been through.   I was moved to do this by your stories.

The story that moved me the most was, paradoxically, by someone who, at least until last week, was not on speaking terms with me (and vice-versa).   “S” was still on my Outlook group distribution list probably by accident, and got my email.  He took the time to write back and share his story of loss.  While telling our stories is hard for all of us, it took an impressive amount of maturity and perspective for him to reach out in light of the particular circumstances of our past interactions.   Just the simple act of his doing that made me recognize that by posting this idea initially, I undertook a personal responsibility on behalf of ALS patients everywhere not to stop advocating for this idea until it actually happens.   (By the way, as is often the case with tragedies, our shared experiences trumped whatever it was that caused S and me to be on strained terms in the first place, and I am now pleased to count him among my friends, and I hope vice-versa.)

So, the book is free, and there is no agenda on this site other than to bring this idea to fruition, with your help by disseminating it.    I will post once a week with progress updates and hope to have this in place by Lou Gehrig’s birthday, June 19.

PS  By the way, just because the book is free doesn’t mean that it’s not good.    Just read a few pages and see for yourself.

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8 Responses to “ALS Gehrig Jersey Progress Notes and Tonight’s (1/3) WBZ-1030 Call-in”

  1. Will Adams Says:

    Hey, This is a great idea for creating awareness for ALS. I will definitely get in line for anything that can help the people with this disease.

  2. mark Says:

    GREAT INTERVIEW. LOVED IT.

  3. xyz Says:

    You and Dan do a nice show together. But where was all the ALS stuff? It was only about 5 minutes of ALS? I guess if the Yankees don’t do it, it’s news or if they DO do it, but it’s not news yet.

  4. kcm7 Says:

    Thank you so much Al for pursuing this quest. I too, have been affected by ALS. I lost my father in 1985 to this horrible disease. Back then, there was so little awareness and so few people seemingly affected. Now here I am, 40 years old - the age my dad was diagnosed - and so little progress has been made. I was so young when he became ill and he only survived two years after his diagnosis. Looking back however, I am grateful that he was spared the conditions many today with ALS suffer: He maintained his voice, never used a walker or wheelchair, and was never on a respirator. I often wonder what my life would be like had he never suffered this illness. He was never able to see my brother, sister or I get married, graduate from college, meet his grandchildren, and live the life he deserved to live.

    I pray everyday that progress will be made - that my siblings and our children will never know this disease, and that those who suffer will be given hope. So again, thank you for pursuing this goal - I will do everything I can to spread the word and help raise awareness. As a lifelong Yankee fan, I have to believe that they will grant this wish and help put us a path of success for research, treatments, and ultimately, a cure. My heart goes out to all the families who have experienced this condition, as well as those suffering now. Let’s be the change we want to see in this fight!!

  5. Russ Strader Says:

    Have you contacted the national ALS Association for support in your endeavor? There is a national support organization which can provide administrative backing and just some “oomph” to get you in the door with the Yankees. I think the idea is good, but I would get them on-board. (by way of disclosure, I was affiliated with the ALSA chapter in San Antonio for a while via my wife’s activities there).

  6. alewis Says:

    Yes, yesterday — they referred us to the New York chapter and I expect to hear back from them today. Will keep everyone posted

  7. Joe Burns Says:

    Loved this line from the interview on Monday night about the Yankees: “They have an opportunity to be the most benevolent evil empire.”

  8. FG Says:

    When i saw how many millions the Focker movie made last week end, it crossed my mine that I’d love to see millions raised to benefit ALS research. If the ball clubs would get together promoting the innovative shirt idea, I think they could raise a good deal of money too. Imagine if at each ballgame, each patron would donate just $1.00, how much could be raised in a season. It’s past time to do something dramatic to raise awareness of this dreadful, fatal disease!

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